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Peripheral Neuropathy - Anyone else?
Neuropathy | Last Active: Aug 9, 2023 | Replies (110)Comment receiving replies
Hello all - after 2 years of every test known possible in the medical world as we know it I was diagnosed with peripheral neuropathy in November of 2011. It is much more pronounced in my right foot. I have tried gabapentin and lyrica but my body would not tolerate both medications. My neurologist and GP have me on amiltriptyline - 50mg once daily. It is not helping and my condition is getting worse. Last night was the worst night of my life. I wanted to die. The pain was absolutely excruciating. I am trying ice packs and am now resorting to acupuncture. I also have the condition in my ring finger and pinky of right hand. Can anybody out there help me? I feel very alone and isolated with my pain.
Replies to "Hello all - after 2 years of every test known possible in the medical world as..."
I can relate to your pain and frustration.
For 10 yrs now I have been dealing with neuropathy, started with numbness and tingling in my feet, gradually over the yers going up my body.
My lips are also numb,and started at same time.
I now have numbness in my right hand, no feeling in my pelvic area,bladder and Rectal issues.
I have gone to 6 or so neurologists with no help and been diagnosed with CIDP.
I’ve been told I’m a unique person..
I was on same meds, Gabapentin,Lyrica, had IVIG infusions,all doing nothing for my symptoms.
I take tramadol at bedtime because my feet hurt so bad, and during day I take extra strength Tylenol which helps a little with the pain.
My balance is awful, I use a walker and a cane because I’ve fallen a lot.
I wear anAFO brace on my right foot because I broke it 3 times in a year back 5 yrs ago.
Right now I just don’t know what to do next, im just trying to live my life as best as I can.
It’s just so hard not being able to do everyday things when you have mobility issues and no balance.
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So sorry you are having this terrible pain. I feel for you, wish there was some way I could help.
I use THC and CBD gummies (5 mg is usually enough) in the late afternoon and evening when I have bad pain days. Also helps me sleep at night. We buy them in Michigan when we visit my daughter.
I take a low dose of Gabapentin and use 650 mg arthritis Tylenol morning and afternoon, also 1 at night if necessary. (my rheumatologist says no more than 3 a day). A low dose muscle relaxer also helps (2 mg tizanidine at night). I also also taking hydroxychloroquine for my auto immune Sjögren’s. So all in all, it seems like a lot but it all works together to keep me walking, and helps the neuropathy pain at night. It comes and goes, so have to take it a day at a time.
You may not be interested in my pain, but know we are here for you to talk about it. It helps me to know I can communicate with others who can relate. My husband gets tired of hearing about my aches and pains, but he is very supportive and getting more so as I have more issues crop up.
Try to get some THC! It really helps me, you may not like it, but it’s worth a try. We also used to drive all the way to CO to get it. Perhaps you are in a state that allows medical cannabis, or close enough to a stare with recreational cannabis?